PET scan

After a lovely, easy, three-year ride on a two-drug myeloma
regimen, my right shoulder was hurting and a PET scan showed a lesion (a
collection of myeloma cells showing bright red) in my right scapula.
M-spike and IgG hadn’t changed, but Lambda Light Chains had more than doubled.
The myeloma was back. It never gives up.

My Mayo doctor ordered radiation treatment of that lesion, and added
dexamethasone to the two-drug therapy. Now, a month later, the ten
radiation treatments are complete and I’m taking the dex. Last week’s
blood test showed Lambda light chains back down to normal again, a very
good sign.

Another PET scan and doctor’s appointment in a couple of months will tell us whether that scapula
really is better. I think it is, because my shoulder doesn’t hurt any more. It itches a little, because the radiation lightly toasted the skin over the scapula, but I don’t mind and it will heal.

A lesson learned: A lesion formed but neither M-Spike nor IgG went up, which means that at least some of my myeloma is “nonsecretory” (doesn’t secrete monoclonal proteins). Therefore we’ll have to pay more attention to Lambda Light Chains. Maybe I’ll need more PET scans too? I wonder if there’s a limit on those these days. Checking Lambda Light Chains is just a simple blood draw for a lab test, though it’s nowhere near as comprehensive as a PET.

Ok, so I thought I ought to update people on where I am since my last post.

Not an awful lot has really changed but my head is totally screwed at the moment. In summary, I have known that my paraprotein numbers have been rising, but I think somewhere in my head I felt that they weren’t an accurate reflection of what the myeloma was doing, and that I must be fine….after all, I was playing netball, walking the dog loads, running after the kids and decorating our house. How on earth could I have properly relapsed? My fabulously expert consultant must have got it wrong and had probably just over egged the whole situation??

Even when I felt my back crack playing netball, I made myself believe it was just an injury, that I could keep playing and that I was fine. My team mates kept telling me to stop, but I couldn’t do it. Perhaps a part of me knew I was fooling myself and I think at the back of my mind, I was worried that this might be the end of my sporting life – I wanted to play as much as possible until then. I’m not sure playing myself into so much pain that I was wincing all over the court was sensible and I knew that….but continued to do it

After a postponement of my PET-CT scan (due to me painting up a ladder within the 24 hours beforehand!) I finally had my scan a couple of weeks ago and got some of the results on Thursday. I’ve been told that I have active myeloma in my pelvis and spine and that this is likely to be causing the pain that I’m in.

I don’t know fully what it all means as my consultant hadn’t had the full report back – he could confirm that my verterbrae hadn’t collapsed….a good thing of course! But he seems to have suggested that there could be damage that can’t be seen to the naked eye. He’s on holiday this week, so I’ll just have to wait till next week to know the full story. But in the meantime: Stop the netball. Stop the decorating. Stop lugging new toilets upstairs.

I had assumed that the pain would go once I go through the next 12 months of treatment. Nick has suggested that it might not. The whole thing has now scared the living daylights out of me. I spent an hour sobbing on Nick last night – it’s not always easy to be positive as much as I try. I don’t like upsetting other people with what I’m going through so I think I tend to put a brave face on it. But as I’ve always said, this is my place to spill my guts out and tell the truth of how I feel. I do sometimes find that hard – I know other people who are in a worse place, both with their myeloma, and also those just struggling with hard life situations. But I need to be able to be honest with myself somewhere.

When you get through the first treatment of myeloma, when you finally get into remission (or a very good partial remission as I did), and when you eventually allow yourself to believe that you are going to see your children into their secondary school, it is hard to be realistic about that situation changing. For a long time into my remission, I felt like I had been a fraud. I’d told people I might not make 5 years with my fundraising, and here I was 9 years later still in remission. Did everyone think I’d lied to them? Had I? Maybe I didn’t really ever have myeloma (yes, even that thought went through my head!).

Even when I was taken off my maintenance therapy in November, I didn’t really believe that I would relapse officially. And then I accepted it a bit. But I still kept telling myself that it would all be like last time. That all I need to do was to survive the treatment and then we’d get another 5-10 years of remission again. And of course by then, there’d be a cure for me.

But this last week, has made me realise that things might be different this time. Last time, I didn’t have any pain or any damage. Does that mean that my myeloma is more aggressive this time? Does that mean that it has mutated? What will that mean for how my treatment works? What do I do if it doesn’t work. What do my family do if the treatment doesn’t work. One of my myeloma friends has had exactly that happen and it is a total head f*ck if I’m honest…there are no other words so I’m sorry if I offend with that language. And last night all of my fears and sadness spilt out onto poor Nick.

I’m back to being scared about what our future looks like and how long I’ll be here to enjoy it. Stupid really – I think I should have enjoyed the ‘fraud’ period more! I will stop myself thinking like this as I know it doesn’t help any of us. But it’s hard when you’ve allowed yourself to think that you’ve got it all back and then your world comes tumbling down again.

I know I’ll pick myself up again. Nick is the most amazing man in the world and I just couldn’t do any of this without his love and support. But who supports him? He does have people, but isn’t great at accepting anything. And we’re both quite similar in liking to think that we can cope without other people. I’m not sure if he’s more scared this time too….it’s never quite as straightforward second time round. I’m 10 years older. My body won’t be quite as resilient. It’s already weakened a bit from the first round of treatment.

Anyway, this has been a bit of a rambling post. Not particularly upbeat – sorry. Hopefully I’ll feel a bit more upbeat next time I write…..

Stable:

Since April of 2016 my treatment regimen has been Pomalyst (pomalidomide) and Darzalex (daratumumab), with dexamethasone in the early months. That combination brought my IgG and M-Spike down to the lowest levels seen since diagnosis 14 years ago. M-Spike has not been above 0.5 g/dL since August 2016, and it was 0.5 again last Tuesday. IgG was 536 mg/dL, about where it has been for more than a year. This is wonderful.

The Darzalex protocol (with Pomalyst) calls for infusions once per week for 8 doses, then every other week for 8 more, and finally once per month “until disease progression.” So far so good. Darzalex is an infusion that takes several hours, but I get a blood draw, then a visit with the hematologist, and finally the infusion, and I’m still out soon after noon. Some people bring a book to read – I bring my laptop and it’s no problem at all.

I take it easy for the rest of the day, and life is back to normal the next day. Darzalex is given with some prednisone (or dexamethasone) to reduce the likelihood of an infusion reaction, and I do feel some side effects from that steroid, but none from the Darzalex. Life is good. 28 Infusions of so far – I wonder what my life would have been like without that potent, innovative new medication.

Pomalyst has been part of my treatment regimen, 2 mg daily, for all but one of the last nine years. For the past two months my doc and I have tried cutting that to 2 mg for 21 of each 28 days, with no discernible increase in M-Spike or IgG. Perhaps we’ll reduce it more, we’ll see.

PET Scan:

This was encouraging too. “Essentially complete metabolic response of lytic bone myelomatous lesions to therapy. No new FDG avid lesions.” In other words, the old myeloma hot spots are gone and there are no new ones. Three other findings were worthy of note:

Some inflammation at the bottom of the esophagus. This matches my own symptoms of occasional acid reflux. Something to deal with.

Stable, chronic thyroiditis. Yup. Dealing with it.

“Reactive FDG activity at the origin of the right hamstrings.” No kidding! I’ve been battling this running injury all summer, and my sports doctor recently used ultrasound imaging to diagnose it. He’ll be happy to hear that the PET scan confirms his diagnosis. Cool! I’ve requested a disc with the actual PET images (always do), and can’t wait to see it myself.

Transplant:

In 14 years with myeloma I have not had a transplant, because for all of that time the medications have kept my myeloma stable. I asked the doc if there was any reason to think about collecting stem cells for an autologous SCT now, and he thought not. I’m already 76 and currently on a good regimen, with several new therapies to try when the current one fails, and with more therapies in the FDA-approval pipeline. By the time those options are exhausted, I’ll hopefully be too old for any transplant doctor to consider me a good candidate. So now my goal is to become the myelomiac to live the longest without a transplant. Well, somebody’s got to do it.

Before I started the current regimen, a PET scan last April 9 displayed five different lytic lesions, three of them in the spine. Last Wednesday’s PET scan showed that all five lesions are significantly decreased, and most are gone. One isn’t even mentioned.

This is excellent news. We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn’t guarantee freedom from bone damage. With these PET results, we can be pretty sure that no damage is occurring. As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra – looked like about BB size – damage that did occur before this regimen, but probably not bad enough to put the vertebra at risk of breaking.

So what is this potent regimen? Please note: I am not a doctor. This is working for me, but might not for you. I am taking Pomalyst (pomalidomide) orally, 2 mg daily, 28 days of 28, and receiving infusions of Darzalex (daratumumab). At first I received the Darzalex weekly, then every other week, and the last three have been four weeks apart. According to the Darzalex prescribing document, these monthly infusions continue “until disease progression.”

PET Radiology Report

I’m all for that. Notice, though, the presumption of disease progression, Myeloma always figures out a way. So now that the myeloma is stable, the hope is that the period of stability will last a long time. Happily, neither medication brings serious side effects with it.

With the Pomalyst and darzalex I am also taking dexamethasone (DEX) 12 mg on the weeks with no Darzalex infusion. I asked Dr WG if I could stop the DEX, but he said that he prefers to ramp it down slowly. He voiced the scenario that I have feared from the outset – a broken vertebra would most likely put an end to my running lifestyle. As he suggests, I will happily (or grumpily) take 8 mg once weekly for the next month at least, before reducing it further. DEX is no fun, but 8 is better than 12.

Overall the news is good, and life is great. Before long we’ll be off to Philly, to run the 100th marathon with myeloma.

Went to UCH for my 3rd Week of Chemotherapy Maintenance of Velcade Subcutaneously and Dex 20 mg Intravenously…drove myself. I received the first 2 weeks in Idaho. I will need one more dose next Monday, March 19 2012 to complete the 4 week cycle.

Today is Day 14 of 14 for my Revlimid 10 mg and I will have the next 14 days off. I did not re-order my Revlimid from Curascript until after I see Dr. Myint on Thursday with my bone marrow biopsy results since he may change the dosage and/or medication.

Took my 24 hour urine jugs in to the BIC (collected 0600 March 11 2012 to – 0600 March 12 2012.

Went to the lab draw area in the Cancer Clinic. Had to be poked twice before they got my blood.